Is it primary of secondary or do I have polycythemia at all , no doctor is able to confirm ?

All I am Male 28...

Haemoglobin levels at 17 ,

Haemocrit at 52,

Serum erythropoiten levels are low at 3.5 ,

RBC is 5.5

JAK 12 -15 and jak v617f are all NEGATIVE.

Spleen size 10.5

no symptoms except itching which happens very occasionally.

In the last two years I have done blood letting two times only. The bone marrow does not show anything pertaining to profileration and shows normal haematopoesis. The ferritin levels are low but still in the normal range.

I have been smoking for last 8 years, but have quit smoking for last two months. The levels still does not seem to have reduced. My oxygen saturation level is however at 99 , but doctor says it will take 15 , 20 years for a person with secondary polycythemia to show lower oxygen levels.

I met Doctors in Germany and India and no one could confirm if it is primary or secondary polycythemia.

I am about to get married and not sure if this has to be really informed to my fiancee as it is still not confirmed that I have a primary polycythemia.

The current haemocrit level is 49.1 and the doctor has asked me take ecosprin everyday.

HAS ANYONE COME ACROSS SUCH SITUATION , would be really helpful if someone can throw some additional light on the same.

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  • Don't you think you should inform fiancee so she can make an informed decision rather than dropping on her at a later date

  • Shelly , I 've just informed that my counts are on the higher range. I have not told anyone for that matter that I have polycythemia and take up something on me as it has not yet been confirmed by any of the haematologists here in Germany. The main reason for this post is to understand if anyone else has faced similar issue which is not straight forward. I m really confused about it.

  • If it is clear that you have PV ( which it seems that is what the doctors are saying) why does it matter if it is primary or secondary? If you started as ET and then converted it will not change how they treat you. PV is not heritable, so no worries regarding future children.

    IMHO, I think you should tell your fiancée. Think about it - you are vowing to spend your lives together. She deserves to know. Wouldn't you want to know if she had a medical condition that would impact your lives? What is the downside of disclosure? you want your relationship to be based on mutual trust, right? If she doesn't want to marry you because of it, it is better you know that now...don't you think?

  • Hi Venkita

    Secondary polycythemia is as you have suggested down to lifestyle in most cases, smoking is one, but i believe could also be caused by working conditions etc. You have said you have smoked for 8 years so its ot like its a lifetime of smoking thats caused it, although you dont say how much you smoked which may be a contributing factor. It can also be caused by environment such as living at high altitude

    I think your right that it is important to understand if its Primary or Secondary as I would expect that to determine what treatment you can expect to receive, so its important you try and push them to determine a diagnosis.

    Your HGB levels are within the normal range (although top end) and HCT is top end normal too, what you dont say is how high they get before venesections.

    It is fair to say there are different types of Primary polycythemia too, not just PRV....the fact you are Jak2 negative doesnt mean you havent got PRV, 95% of people with PRV are Jak2 Positive but 5% are negative so it is possible.

    Itching is a common symptom of PRV too.

    It does seem like you have something going on, and you need to be firm and push for answers.

    With regards to who you tell, thats your choice, some people i know with these conditions choose to share as little as possible with friends and family, others tell them everything.

    I fall into the 'tell them everything' category as i think it makes it easier for them to support us.

    Good luck, i hope you get the answers you need, just keep pushing, but also be mindful sometimes these conditions can take sometime to diagnose.

    Paul

  • Hello Venkita, I passed your query through to Prof Harrison and she has said that it is difficult to tell if you have primary or secondary PV but it should be possible to work this out, you will need to push your haematologist for a definitive diagnosis so that you can move forward with your life. Smoking effects can hang around for months. With regards to who you tell, that is a decision that you must make yourself. Kind regards, Maz .

  • Hi Max,

    Thanks much for checking on this. Good to have such forums which really helps u with more insights. My problem is no one is able to provide a clear criteria for polycythemia.

    Not comfortable with concluding that I have an mpn when the doctors are even not clear about this, as I understand that there are limitations too from their side too. I also would like to decide things scientifically and practically rather than emotionally.

    1. My haemocrit level and hb level, without phlebotomy for

    18 months was 52 and 17.6 respectively. My RBC level was 56*. I was smoking arOund 8 cigarettes per day for 8 years .

    2. The last venesection I had was on February.

    Readings after 4 months without thinners / zero smoking ,

    1. My EPO levels were taken 2 days back (June 30) AND for the first time it was in normal range of 4.5 against 3.5 in Feb 2015

    2. My Jak 12-15 and V617F are all NEGATIVE.

    3. Haemocrit 50, RBC 55, HB 16.5. ( have increased from 45.1 , 49, 15.8 of February )

    Not sure if this helps to distinguish. Would be really helpful if u could help in letting know if any other addironal tests are missed out.

  • Hi Venkita, I am afraid that we cannot give you any further advice, we can only give general advice, to you and to anyone using this forum, specific medical advice needs to come from your own doctor as they have access to your full medical history. Kind regards, Maz

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